Speakers: Mariane de Montalembert, Noemi Roy
Professor Mariane de Montalembert received her MD from the Paris Descartes Medical School in 1982 and her PhD in Ethics in 1994. She specialized in pediatrics, statistics (option clinical research), and transfusion. She is at the head of the Hemoglobin Diseases Unit at the Necker University Hospital, which follows 600 children and the «ROFSED» healthcare network for SCD children in the Parisian area (Therapeutic Education Unit for 700 children and families). Prof de Montalembert is a member of the French Society of Pediatrics, in which she has chaired for more than 10 years the Ethic Committee, of the French Society of Hematology, the European Network for rare and Congenital Anaemias (ENERCA) the European Reference Network in rare Haematological Diseases (EuroBloodNet), the European Association (EHA), and the American Society of Hematology (ASH). She is member of the EHA board since 2020. She coordinates clinical research programs, notably on hydroxyurea in children with SCD, transfusion, and iron overload.
Dr Noémi Roy trained in medicine in Edinburgh and carried out her haematology training in London and Oxford, where she obtained her PhD. Her main interests are haemoglobinopathies and rare inherited anaemias, and in particular the genetic investigation of inherited anaemias, including whole genome sequencing. She is also involved in investigating the management of iron deficiency in diverse patient groups. She is dedicated to using patients' views to guide how research in conducted in haematology and coordinating best practice care in red cell disorders at the European level. Noémi leads quality of life studies in sickle cell disease as well as novel ways of improving compliance, patient understanding and patient pathways for high quality care.